How to raise a kid with a heart condition
What did your parents do right? What might they have done differently?
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus occasional essays, links, recommendations and other good stuff about living with a wonky heart. Add your email to join this community and ensure you don’t miss the next edition.
Welcome to a bonus edition of The Heart Dialogues. In a recent essay, I talked about how my family rarely mentioned my heart stuff while I was growing up.
A reader wrote to me with the following question:
"My 7-year-old son was also born with tricuspid atresia. I often wonder what he thinks about his heart condition. We treat him 'normally,' but he knows his heart is different given that we see his cardiologist twice a year, all of his meds, and two scary arrhythmias recently. I would love to know, if you could have changed anything about the way your parents parented you while growing up, what would it be? Did you like that they never spoke about your 'heart'? Did you wish they told you more? Sometimes I worry that I am doing the wrong thing." —Britt Melsheimer, Connecticut
This was a tough one to answer, but it got me thinking... My parents did the best they could with a difficult and scary situation. In many ways, I appreciated that they didn't treat me differently, didn't make a big deal of my heart stuff, and didn't make me feel like I was a sick child. I never knew any limitations.
At the same time, thinking back on it now, I wish I’d been able to talk more openly about my experiences. Sometimes it felt like my heart complications only existed for me. If I mentioned them to other people, I assumed I would burden them or freak them out (or both!). I grew up with an amorphous feeling of shame about my health and body.
Today, there are a few things that would have been helpful for me:
I would have appreciated more talk about my heart in a normal, everyday way, maybe even talking about it as strong or special.
I wish that my parents, especially my mom, had had more resources, from mental healthcare to Google (which, of course, didn’t exist in the 1980s and 1990s).
I would have benefitted from more of a community. I didn't meet another person with CHD until I was in my mid-30s. Back when I was a kid, there were no Facebook groups or Zoom meetups or, ahem, Substacks, but I wish I would have had some of that as a kid—just knowing I wasn't alone, I wasn't some kind of misshapen unicorn with scars.
My parents, especially my mom, did a loving, devoted and careful job raising me. My mom was at every appointment, she taught me to be an advocate for my own health, and she made damn sure that I knew about my own medical history. I’m lucky that she was so involved in my care when I was younger (even if we sometimes drove each other crazy!).
Today, there are so many more places to get information, advice and connection, from the Adult Congenital Heart Association nonprofit to Reddit’s r/chd subreddit to the “Heart to Heart With Anna” podcast. But there is no right way to raise a kid with complex medical issues, and I’m sure Britt isn’t the only parent with questions.
So, as we approach Mother’s Day, I want to know:
What would you tell a parent who’s raising a child with a heart condition today? What did your parents do right? What might they have done differently? How are they involved in your care now?
Tap that comment button to leave a note directly on this post, or hit reply to this email to reach me directly. I hope to include responses in a forthcoming edition of the newsletter (but I’ll get permission first if I plan to publish your comment).
I am 62 years old and was diagnosed with CHD when I was 3. One of my earliest memories is being in the hospital for a catheterization and how scary it was to be away from my parents, I was 3 at the time. Those were the "dark ages" because I had to be put in a hypothermic state for the procedure, so I was packed in ice. To this day, I don't tolerate cold well. I went on the have surgeries at 11, 14 and 45.
What did my parents do right? I think my parents were very open and forthright with me regarding my treatment and associated risks. They were very supportive, loving and understanding of my fears. I don't feel like they ever sugar-coated anything. They encouraged me to ask questions of my doctors and to learn and understand as much as possible about my condition. They taught me to be a strong advocate for myself.
What could my parents have done differently? While they encouraged me to do the things I liked doing, I felt that they were overprotective and that I didn't really get to spread my wings until I was in my 20's. When I told them I was going hiking and camping for the first time, they tried to talk me out of it, I was 24. I did it, had to prove to them and myself that I could. I have a younger sister and I feel like she was short-changed a bit when we were growing up. I was always more doted on by my parents and protected and I think that hurt my sister. To this day, I believe there is still some underlying resentment. Parents, make sure that your other kids are not feeling left out. The one thing I really wish my folks would have done is to have me see a therapist after my first surgery. Facing your mortality at 11 isn't easy, and there wasn't really anyone I could talk to that about. We were not a religious family, so I didn't have that avenue. I think talking with someone would have been very beneficial, I needed to express my feelings to someone outside of the family. Many years later I was diagnosed with PTSD and my dad actually apologized for not finding someone for me to talk to early on.
At the current time, I keep my mom (my dad passed in 2007) apprised of my situation if there are any changes and, I know, she will be there to support me if I need her.
All this said, my parents did the best they could given the circumstances and the times. They were young parents and were forced to grow up quickly due to my condition. Hindsight is 20-20 and, I'm sure, if they had to do things over again, they might handle things differently. And, on last thing I would say is, this is a lifelong journey. You need to prepare for that and give your kid the best tools you can so they can make the best decisions for themselves going forward in their lives. Don't be afraid to question and get second opinions.
Your three points were spot on for me. In all honesty, everything you’ve written about the heart is nearly identical to my experience minus the actual diagnosis. I grew up feeling like I was broken but in an extremely special way. It wasn’t until I was an adult, married, with kids that I started to connect, even if it’s just through stories, with others with CHD. It’s a tough, lonely journey. My parents did so many things right, but I wish we could have spoken about it more, that I had pictures from my surgeries, that I was able to find community earlier, that I wasn’t always the one to bring up the subject and despite their best efforts, even as an adult, I feel like my heart condition is a burden on my family. It’s taken so much from us, in time, and worry and mental space and given back so little.